Journal article
Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa
AJOB empirical bioethics, Vol.15(2), pp.133-146
01/18/2024
DOI: 10.1080/23294515.2024.2302993
PMCID: PMC11153024
PMID: 38236653
Abstract
Inadequate knowledge among health care providers (HCPs) and parents of affected children limits the understanding and utility of secondary genetic findings (SFs) in under-represented populations in genomics research. SFs arise from deep DNA sequencing done for research or diagnostic purposes and may burden patients and their families despite their potential health importance. This study aims to evaluate the perspective of both groups regarding SFs and their choices in the return of results from genetic testing in the context of orofacial clefts.
Using an online survey, we evaluated the experiences of 252 HCPs and 197 parents across participating cleft clinics in Ghana and Nigeria toward the return of SFs across several domains.
Only 1.6% of the HCPs felt they had an expert understanding of when and how to incorporate genomic medicine into practice, while 50.0% agreed that all SFs should be returned to patients. About 95.4% of parents were willing to receive all the information from genetic testing (including SFs), while the majority cited physicians as their primary information source (64%).
Overall, parents and providers were aware that genetic testing could help in the clinical management of diseases. However, they cited a lack of knowledge about genomic medicine, uncertain clinical utility, and lack of available learning resources as barriers. The knowledge gained from this study will assist with developing guidelines and policies to guide providers on the return of SFs in sub-Saharan Africa and across the continent.
Details
- Title: Subtitle
- Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa
- Creators
- Abimbola M Oladayo - University of IowaSydney Prochaska - Department of Global Health, College of Public Health, University of Iowa, Iowa City, Iowa, USATamara Busch - University of IowaWasiu L Adeyemo - University of LagosLord J J Gowans - Kwame Nkrumah University of Science and TechnologyMekonen Eshete - Addis Ababa UniversityWaheed Awotoye - University of IowaVeronica Sule - Department of Operative Dentistry, College of Dentistry, University of Iowa, Iowa City, Iowa, USAAzeez Alade - University of IowaAdebowale A Adeyemo - National Human Genome Research InstitutePeter A Mossey - University of DundeeAnya Prince - University of IowaJeffrey C Murray - University of IowaAzeez Butali - University of Iowa
- Resource Type
- Journal article
- Publication Details
- AJOB empirical bioethics, Vol.15(2), pp.133-146
- DOI
- 10.1080/23294515.2024.2302993
- PMID
- 38236653
- PMCID
- PMC11153024
- NLM abbreviation
- AJOB Empir Bioeth
- eISSN
- 2329-4523
- Grant note
- DOI: 10.13039/100000002, name: National Institutes of Health, award: NIH DE028300; name: National Institute of Dental and Craniofacial Research (NIDCR)/Fogarty International Center, award: NIH K43DE029427; name: National Institute of Dental and Craniofacial Research T90 Training Grant, award: NIH DE023520
- Language
- English
- Electronic publication date
- 01/18/2024
- Academic Unit
- Oral Pathology, Radiology and Medicine; Anatomy and Cell Biology; Stead Family Department of Pediatrics; Epidemiology; Pediatric Dentistry; Craniofacial Anomalies Research Center; Dental Research; Law Faculty
- Record Identifier
- 9984548289202771
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